Living Rather Than Wallowing

A few months ago, I posted a picture on my Facebook page that I meant as an interesting look of someone who doesn’t fit into the uneducated stereotype of looking sick. Young. Fit. Working on fitness to build lean muscle to support joints.

For the most part, the response was positive. I had many, many comments where other patients offered up how they were staying active: swimming, walking, and even a few CrossFitters and mud runners. Those last two things are activities that frighten me…which means I’m dying to try them.

It was shared pretty widely on some bigger groups, and for the most part, the response was the same. Encouragement. Sharing what works and how to stay active. I loved it!

However, I was taken aback by a few comments on my page and on others who shared it. Comments where people said what I was doing was dangerous. Comments where people cautioned others to not look at my picture and hurt themselves.

At first, I thought WHAT? This is me! How could a picture of me even be construed as me doing something dangerous? I’m so scared of getting hurt! I mean, anyone who knows me knows that I go to great lengths to make sure I DON’T get hurt. And look at my wrists- I have to use the rope pull because my wrists don’t enjoy the regular handle. And while you can’t see it in the picture, I know that I was only doing 25 lbs.

After I got all the defensive out of my system, I realized a couple of things.

1. Most of you DON’T know me in real life to know how cautious I actually am.
2. Most of you don’t know the modifications in the picture because you can’t see the weight I’m pulling nor have you seen me try to use the regular grips.
3. They have a valid point.

So yes, I am certainly trying my hardest to build as strong of a body as I can to support some limitations, but I also don’t want to make anyone think that you should just jump into pumping iron (LOL if you’ve ever seen me lift weights- I use a spotter, wrist straps and there is lots of whining sometimes) without doctor approval, research, supervision and good old common sense.

I’m not really sure what else to say. Take a picture as that doesn’t happen very often. :) But I want to be clear that those few comments didn’t go unnoticed, and I want to make sure that I am responsible in writing my story with the clear understanding that we all have different capabilities and comfort zones. Yes, I’ve always been one to push it. No, I don’t see that changing.

But if I’m not telling you about modifications and what I do to make activities safe for me, please call me on it.

Two weeks ago, I moved back to Charlotte, NC. It’s been a long time coming…

I moved to Greensboro, NC two years ago for professional reasons. Yes, I learned a lot. Yes, I was very pleased with my doctors, my trainer , my nutritionist etc…Yes, I met a handful of people who I hope to never ever lose touch with…

BUT.

Greensboro and I were not compatible for many reasons. I like diversity. Diversity of people, diversity of opportunity. I sadly found myself in a place where I worked so hard to live well but had no real quality of life as far as opportunity. I have been absolutely miserable since day one. But that is subject matter for another entire blog and one that I will not be writing as I don’t want to dwell on negativity. I also think that would be disrespectful to the people who live there that I love. Just because it didn’t work for me, doesn’t mean it’s wrong for them.

On the flip side, I will admit that my misery allowed for laser like focus on my health. I never would’ve stopped to make time for cooking, training, and educating myself on true wellness. And now that I’ve had that opportunity, I don’t intend to lose sight of that. So while I can say some pretty brutal things about my time there, thank you Greensboro for giving me the space to get a real handle and make great strides in my health.

I am blessed and lucky to work for a company who let me transfer back. And that I have done.

The last few months have been exhausting . Being in two places at once is hard on someone 100% healthy. Throw RA into the equation and you know how that goes.

I took all of last week off to settle in and let’s just say I did a fair amount of unpacking but I did even more resting and taking it easy.

I was flaring pretty badly up to the day of the move, and it was gone within two days. I always underestimate the value of taking time for yourself and allow me to say: be ye not so stupid!!!

Stay tuned for more regular blogging. I’m still in the phase where I’m walking and driving around with a big stupid grin on my face about being back here. But I still have lots to say and hope to be able to say it with more frequency now that I’m back where I need to be. :)

I have always, ALWAYS, been a klutz. If you are curious as to who could trip, fall, face plant, or otherwise maim themselves in the safest of situations…I’m your girl.

Back in my super fit dancing days, I was performing at an outdoor venue, hit mud, slid, fell, got mud in my hair (and EARS), and got right back up and finished.

I busted going down wooden steps in slick shoes at a child’s birthday party and dropped F bombs in front of a bunch of 3 year olds. Parents love me!

I fell down a handicap ramp. For serious. Who falls down a handicap ramp? ME.

I wiped out in a gravel driveway a few years ago. I tripped on the flip flop the was on my foot.

I ran for a ringing cellphone in socks on hardwood floor. My nose broke my fall as it grazed down the side of my ottoman. Rug burn on noses sucks. Just thought you’d like to know.

My coup de grace wasn’t a fall but more of a midair collision. I was tubing at the lake. My friend and I were sharing a tube meant for one person. Hello Darwin Award! The driver accidentally slung us into wake. We flew up in the air, hit each other hard, and hit the water. Thank God for life jackets! I could hardly move for three days: my right side and her left side were badly bruised and banged up.

To clarify, every one of these falls happened post arthritis diagnosis minus the dancing example. Sure, I fell prior but the falls weren’t as memorable and none resulted in permanent injury. I thought all of it was funny until I slipped on unmarked standing water in the entrance of Target. I had no problems with my ankle before that, and two years later, it’s still not the same.

It’s fair to say that the idea of falling now, thanks to Target, is frightening. To be honest, it really shook me up and I may have completely freaked out. I sometimes felt like my own safety police, trying to identify fall risks and determine ways around them. I built the idea of falling into the WORST. THING. EVER. and it really controlled what I did for a very long time. It was exhausting.

It’s also fair to say that increasing physical activity increases your risks if falling. I have been well aware of that for the past year and a half, and refuse situations that I think will inevitably lead to me laying myself out on the ground. No box jumps is my mantra.

This past week, I fell.

We were doing standing lunges: feet together, step out with one foot, knee to the ground, stand up. Repeat on other leg.

Easy right? But klutziness doesn’t discriminate between easy and hard, and it certainly doesn’t care if you’re afraid of something.

We were doing a long circuit with high reps. My second time through, I was on number 28 of 30 standing lunges. I was tired. My muscles were fatigued. I remember thinking ‘two more so let’s do your best and touch that knee to the ground.’ Note to self and others: it’s ok to hold back because you’re tired.

I stepped out with my left (bad ankle) leg, bent my right knee so that it was touching the floor, and the muscle around my right knee completely cramped/spasmed as I was coming up. At that point, both my legs turned to jello. I still innately don’t trust my left foot but I was able to pull it back underneath me and into a squat position.

I think I would’ve stayed upright if it’d been the other foot, but I feel like I still compensate some with my right so trying to shift some weight to a leg that was mush?

Ass. On. The. Ground.

I sat there for a second and assessed how I felt: I didn’t hurt. It was a true muscle cramp and unlike the Target fall, once I hit the floor and let the muscle relax, I felt fine.

Dignity and pride were both a bit bruised and bloodied.

The next day I was still fine. And the next. And then I was weirdly excited!

I fell! On the ground! And the world hasn’t ended! And it happened too quickly for me to even think about it!

I swear that there’s a point to this post. I talk a lot about fear in a previous post: fear of injury, fear of failure, fear of even trying because maybe I wouldn’t be able to.

As I continue on this path, I am constantly having to assess where these fears are coming from. What I’m learning is that many of my limitations are ideas rather than physical.

Facing these fears is some pretty heavy sh*t for all of us, and all of our fears are different. Those feelings are there for a reason but in my case, the reason isn’t always valid. Yes, it is absolutely necessary for us to protect ourselves and our bodies, but not at the expense of being fearful of life.

I have fallen lots of times (cringe). Only one of these times did it result in a serious injury. Yes, it is ok to be upset about an injury and protective of a body that has minor limitations. But no, it’s not ok to let one bad thing keep you from moving on with life.

So…how does one with RA successfully do a full workout, creaky joints and all, and how does one afford all of this on top of pricey medication?

That, my friend, is something I’ve spent a long time trying to figure out and am still modifying to this day!

Let’s start with the easy part!

I have problems with both wrists, my left being worse than my right, and at times I have a hard time holding on to more than a minimal amount of weight with my hands.

If I had to do a full push-up to save all of humanity, I’m pretty sure we’d all end up dead. I apologize, humankind.

But in trying to strengthen a body with RA, there is absolutely no shame whatsoever in ‘girl push-ups’. There is also no shame in modifying them in other ways.

I do girl push-ups but had a really hard time at first. Not hard as in I couldn’t do them, but hard as in it has been so long and I couldn’t understand how to do them.

With years of dance, I always had a mirror to adjust and correct myself. If everyone else looked like a graceful fairy and I looked like a jumping cow, I noticed and fixed it quickly. I don’t recall Tchaikovsky writing a piece for a jumping cow dance in The Nutcracker!

Anyway, I tried and tried to figure out why it was so difficult and awkward with my trainer. He’d tell me to bend my elbows and correct my posture but I wouldn’t understand because dangit…I thought I was bending my elbows! I thought I was…because I couldn’t SEE what I was doing.

We worked out in a room with a mirror one night and I happened to catch a glimpse of myself trying to do a push-up.

Y’all, I looked crazy! To best explain it, I had my arms positioned in a way where my arms would go up and down, but it was almost a biceps push-up (arms underneath you) vs a regular push-up where your arms should be a T.

I looked like a velociraptor.

I saw this, moved my arms out, and suddenly it was much easier.

So try checking yourself in a mirror before you decide to try a modification. What feels right in the body you have now may not actually be right.

I have no clue why I positioned myself that way except maybe that my posture has changed and that that position was my new normal.

While I can do ‘girl’ push-ups, I felt more comfortable doing push-ups with the following postures:

Using a barre or wall or even a kitchen counter

Using straps

Doing them this way allowed me to control how much of my body weight I was supporting by adjusting my feet/distance from the wall/rings.

Note: my trainer tried to get me to do this and I wound up with rug burn on my face. So… don’t try this unless you’re sure you can!

For free weight, I use wrist straps.

Instead of gripping all the weight with hands that may have a hard time holding on, it distributes the weight between your hands and wrists. Honestly, I have awful wrists and it doesn’t hurt them. You wrap it on and roll the weight into the strap. Much easier!

For legs, I don’t really have any modifications to share other than if it hurts, stop! We have been successful in finding modified exercises for every lower extremity that sometimes bothers me.

Edited to add: I learned recently that I’m afraid of stepping down backwards. I’ve been practicing stepping down backwards off of a step class bench with nothing stacked to make it higher. There is no physical reason I’m afraid; it just scares me because I can’t see it. Doing this in front of a mirror has really helped me trust that motion more.

So let’s talk price…

Personal training isn’t cheap. The only way I can afford it is that my gym allows payment plans. I may owe them my first child!

Other tips:

A good friend of mine couldn’t afford – personal trainer so she posted an ad on Craigslist looking for someone to teach her how to workout for free. Of course, she got all kinds of SKETCHY (read: hilarious!) emails but in the midst, she got an email from a Health and Exercise Science professor at a local college who said he’d be happy to. She vetted him on the college website and it worked wonderfully.

Which leads me to my second suggestion. Reach out to local sports science programs- I know where I went to school, majors had to work with people in the community on developing programs. Primarily, they worked with disabled children. But I can certainly see working with an RA patient to be very relevant to their curriculum.

Keep in mind, this was from June 2013 when I’d only started this program 3 months prior. 3 months…and I was already seeing marked results.

Suffice it to say, my feelings and thoughts on this a year later, after I have continuously stuck to the exercise program, are a bit more defined.

Honestly, I still don’t know where the heck to even begin with this whole experience. I think the easiest way may be to tell you what I’ve learned as a whole…my biggest take aways…and then take you through how I got there!

So…

Let’s talk about my first few workouts. Yes, the first training session was hard. So was the second. And you know what…my training session coming up tomorrow is going to be just as hard. But it’s a different hard now due to changes I started making for my body a year ago. More on that different hard in another post!

Roughly a year ago, I went to the gym with the intention of completing 30 min on the elliptical. I was nervous because it was my first time doing this in years and I feared my ankle wouldn’t handle it.

Immediately, it was a strange sensation. My left ankle was cracky and poppy, but not painful. Think of the motion of your ankle on an elliptical. Point, down, flex, up. Repeat. The elliptical was forcing me to take my ankle through a full range of motion, something that hadn’t happened in years. I kept thinking about what my doctor told me: if it hurts, stop. And I had a hard time deciding if it was actually hurting or if it just felt weird. Note: I know now that you will know without question when something hurts and you need to stop. I made it about 10 minutes and stopped because it freaked me out.

And there’s nothing wrong with that.

The next day, I woke up and it was fine. I did this a few more times, building strength and flexibility but always stopping when I felt like it was time to stop. I never exercised until it hurt; I somehow innately knew when enough was enough.

Same thing with Zumba. I really feel like my trainer empowered me when he told me I didn’t have to do the whole class. Really! It made an immediate mental difference that I knew I was going into something that I didn’t have to finish. That I could be finished on my own time. It made it a lot less scary.

I’d simply get to class in time to introduce myself to the instructor, explain that I may not be able to finish and that I was not being rude by leaving, and I was then mentally free to do what I was comfortable with physically. I never met an instructor who wasn’t ok with that. And let me tell you- the first time I finished a whole Zumba class, I almost burst into tears when the instructor grabbed me and told me how proud of me she was as I was gathering up my things to leave.

There’s no crying in Zumba, right?!?!?!?

This mindset let me explore activities I hadn’t tried since pre RA. Spinning: you’ve had enough and feel like you can’t do the up and down with changes in resistance any longer? Get rid of all the resistance and have a leisurely seated bike ride for the rest of the class, or leave. Yoga: you just don’t think you can handle anymore up dogs or down dogs? Sit on your mat or sit on your mat in stretches that are comfortable for you or leave. Personal training or weight training: can’t do what you’re being asked to do? Ask for a lower weight or a modification. Or ask to move on to something else. Any trainer worth their salt will be able to find something you can do, even if it’s very basic and low intensity.

I realized over time that I was finding ways to make my own modifications and finding new ways to work with a body that can no longer do it all. You may not be that person who lifts tons of heavy weights…but there are ways and tools you can use so that you can at least do something.

Looking back at what I wrote last year and what I know now, the biggest theme I see is fear. Fear of getting injured. Fear of not being able to do something. Fear of trying. All of this mixed in with not trusting my body. While I certainly have some physical limitations, I had to find a way to overcome this fear to even try to see what the body I have with RA is even capable of doing.

By giving myself a mental ‘out’, I learned over time that my body with RA can do a lot more than I ever gave it credit for. But overcoming this fear is a hard thing, and something I still struggle with today.

So how does one do this? That’s a tough question and one that I imagine varies from person to person. I especially understand that we are all in different stages of disease activity and mobility, and what worked for me won’t necessarily work for others.

For me, creating a safe, judgement free, supportive environment where I was allowed to stop early or to modify or to sit out with no problem was half the battle. Seeing I was able to do even a small thing I didn’t think I’d be able to do was another piece. Seeing physical results through increased joint mobility and flexibility/strength was huge for mentally encouraging me that maybe I could try and be successful at something else.

And if a picture is worth a thousand words, this is what a year and change of very guarded yet consistent effort looks like .

I mentioned last week that I have somehow strangely turned into someone who enjoys cooking: chopping vegetables, using fresh herbs, finding ways to make cheaper at home versions of processed foods I like so that I know the ingredients I am putting in my body.

How did I get there?

I am a Pinterest junkie. I can pin all day if I wouldn’t get fired for it. So for motivation, I started a board where I pinned pictures of skinny people and various workouts. I deleted that board and all its pins recently because…guys… I had it all wrong.

The pictures I was a fan of were all along the lines of ‘thinspiration.’ If you know what that is…or even if you don’t…I think those pictures are dangerous and misleading.

Being female, I already feel the societal pull to be a zero. Even if my body is not made and would look all Skeletor as a zero. Being autoimmunely awesome, I feel even more pressure. Look normal. Look thin. Make sure nobody can tell you’re struggling with RA.

But at what expense does this come for a healthy person? And magnify this expense for someone with rheumatoid arthritis.

Finding this quote really made me think.

Am I making these decisions to work out and change my eating habits because I love myself and my body? Am I celebrating changes I see in my body because they are structural changes I’m making that will in the long run help support joints and make living with RA easier OR am I simply celebrating the number on the scale getting smaller? Do I even really love myself and my body? Can I say anything nice about my body? Well…why the heck not?

I was really surprised at my answers and motivations, and I’ll admit it scared me. I want to be skinny. I want to be normal. But none of those things connected to cultivating a lifestyle of wellness nor did I appreciate anything about what my body CAN do. And I feel that looking at it that way and treating myself and my body accordingly is not giving my body and myself what it needs and deserves. I also think that maybe translates into some not so great situations in my emotional life. And I imagine I’m not alone here. Read the rest of this entry →

Some of you may remember when I got a cortisone injection into my left pointer finger. If I am to play word association with “Left pointer finger cortisone injection,” the first thing that comes to mind is “PTSD, PTSD,PTSD, that was AWFUL.”

I will admit that I have had no problems with said pointer finger since that day that I try to block out.

When my doctor suggested that it was time to consider it for my left ankle, I think my stomach dropped out of my butt and I broke out in a cold sweat. I said I’d think about it…but inside, I was all HELLLLLLLL NOOOO.

You see, my ankles have never really bothered me RA wise. That is until roughly 3 years ago. I went to Target after work wearing foam bottomed flip flops, and slipped on unmarked standing water in the entry way in front of the service desk. I was lucky to be holding on to my cart; I wrenched my left ankle outward and landed on my right kneecap. Without the cart, I am pretty sure I would’ve smacked my head on the floor. My kneecap (knock on wood) gave me no problems after the bruise healed, but the left ankle just never healed completely.

Yes, I should’ve pursued it. Fail on my part.

Yes, the customer service geniuses at Target should’ve handled it better period. The handling I got? The kid looked at me and said oh so profoundly: did you fall? He actually asked me twice…I said yes and then went and hid in women’s seasonal apparel for a really quick ugly cry. It HURT.

Anyway, I digress.

Long story short: I didn’t pursue Target, I reinjured it twice after, and wound up having 3 inverse sprains in a 14 month period. True to RA, I started having some disease activity around the site of the injury. I’ve been working on rehabbing it and it has gotten much, much better. But it still wasn’t 100%.

The more I thought about the cortisone injection, the more it made sense. If I don’t get it to heal completely, surely it will cause issues with my knee and hip later on. I could tell I was walking funny to compensate for it. Are knee and hip problems at a later date really worth something that sucks for only a minute and costs a $40 copay?

When I said that out loud, I realized how dumb I would be to not do it.

So I called, made the appointment, and started the pep talk.

The day of the appointment, I decided the following things:

a) I am not allowed to just not show up and pay the no show fee. An attractive option, yes, but stupid.
b) I am not allowed to ugly cry, scream, and overall pitch a freaking fit. I am too old for such behavior.
c) I am allowed to produce a tear or two. Said tear or two must not be accompanied by any form of sound.

As I sat in the waiting room, I caught myself thinking “I’d so much rather have a pap smear today.”

They called me back and took me to the procedure room. The PA used the ultrasound machine to look at my ankle, take pictures, and put together the plan of attack. She took the time to let me watch the ultrasound and pointed out different features (even though they all looked the same to me.)

My rheumatologist joined us, and while reviewing the pictures/discussing where to go in, I apparently exhaled really loudly. They both looked at me and said “are we really stressing you out right now?”

Um yes. I just heard that a needle was going in the front of my foot all the way to the back underneath the leg bone. That is…stressful.

They had me lay down at that point.

My heart was racing as they cleaned the ultrasound goo off my foot. I made a few quick addendums to my list of things I am allowed to do:

a) scrap all things I’m not allowed to do
b) ugly crying is fine, noise if you must
c) just get through this
d) I can have Starbucks if I live

They sterilized my foot, sprayed it with the cold numbing spray, and told me they were going to do the Lidocaine injection. I tensed up, held my breath, and felt…a very small pinch. No burning, not really even any stinging. Just a pinch.

Huh.

They applied sterile ultrasound goo so that they could see where they were injecting next.

With the ultrasound in place, my doctor said they were going to start with the injection. I starred at the ceiling and realized…if he hadn’t told me they were putting the needle in, I wouldn’t have known. I felt nothing. No pain, no pressure. I did feel a few tiny “puffs” as they injected the cortisone into the joint…but not the searing, unbearable pain of the pointer finger.

It was over in a matter of seconds.

They wiped my foot off, applied a Bandaid, and I was at Starbucks less than 15 minutes later.

As with my finger, it took several days for the full effect to be felt. It was a little puffy for a few days. It’s still a little stiff and sore BUT it’s sore in new places. I was worried about that at first, until I realized it was sore in the places I haven’t used in a long time because I was actually walking correctly.

I am really working on building up balance, range of motion and proprioception right now. I can balance for almost a minute on my left foot now whereas before I couldn’t even do 10 seconds. Range of motion is still a little tight but getting better. Being someone who wants everything done now, I was a little concerned at first that it wasn’t immediately better. But we all know that immediately getting full function back after a long term injury…isn’t realistic. I am slowly but surely seeing progress, and that is fine by me!

I may be changing my word association on cortisone injections…although I hope I never have one again!!